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Barrett Thomas Harris daughter of Neal and Audrea Harris granddaughter of Wanda Harris & Teddy and Janie McCain Born May 25, 2003 |
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Barrett was diagnosed with acute lymphoblastic leukemia on Tuesday, September 16, 2003.
Update Friday, October 31,
2003
Barrett, it was your first Halloween and I am so sorry that it was in the Hospital.
I will make a commitment to you to make every Halloween a memorable one for
you. You were so precious in your Pumpkin outfit. The pictures do not do you
justice. Your cheeks are so fat you look like a chipmunk storing your food
for the winter. Even your Doctors were wanting to take you home. 8:00 am - Barrett had a good night with her Grandmother. She ate well all night. Day 29 chemo is due to start about noon today. Please pray that all goes well with it, that she does not get sick, and the mouth sores won't get as bad this time. Check back this weekend for more pictures. Hopefully, we can get some pictures on the website of "our little pumpkin". Amie Joye
7:00 am - Good Morning Prayer Warriors! Another prayer has been answered! Becky, the Transplant Nurse, called yesterday and told us of the five candidates that have had further testing, two of them are a ten of ten match. That is amazing! That is the POWER OF PRAY! There was a 7/10 match, 8/10 match, 9/10 match and then the two 10/10 matches. The first five!!!!! You can not tell me that God is not working here. He is hearing your prayers and answering them. He continues to keep his healing hand on Barrett. In the beginning when my faith was being tested, I thought it would be difficult just to find one match and here we are blessed with two in the first five. I have given all those worries to the Lord and He is taking care of them. Through Barrett's illness, I have learned that God is in control. Whenever we are faced with a setback or some potential bad news, I take a deep breath, and immediately say a prayer asking God to take my worries and my concern. When I am finished praying, I feel as if I am ready to conquer the world again. I feel very blessed everyday that I still have my daughter with me and that is truly a gift from God. Barrett weighed 12 pounds on Thursday, so she is putting on those lb.'s and the Doctors are impressed with what a fighter she is. Please continue to pray for Barrett and that she will have a full recovery. Mom
Thursday, October 30, 2003 8:00 am - Barrett and Grandmother had a good night. As far as events today, they will take Barrett off of her morphine drip. As you pray for Barrett, please pray for Linda, one of Barrett's nurses. Get well soon and we will miss you while you are gone. Mom will update us later today on Barrett. Amie Joye Wednesday, October 29, 2003 3:30 pm - Good afternoon Prayer Warriors! Becky, one of the transplant nurses has just stopped by to report on the findings for a bone marrow donor for Barrett. They have six possible candidates and two of those have received further testing. One of the candidates was a seven out of ten match and the other one is a nine out of ten match. The first candidate has been eliminated and the second one is a good possibility. We want a ten of ten match if at all possible. Preferably a female that has never been pregnant or a male. The other four candidates results have not been received yet, but hopefully by the end of the week. The survival rate from a nine of ten match compared to a ten of ten match is about the same. We are still looking for a ten of ten match because that match will have a lesser chance of developing a graft versus host disease (GVHD). GVHD will attack the body about 14 days after transplant. This is when most bone marrow transplant patients could develop complications and possibly die from those complications caused by GVHD. You want to have a little GVHD to attack any living leukemia cells but you do not want a lot of GVHD because it can start attacking your organs and cause major damage. Barrett's weight today is 11 pounds 14 3/4 ounces. The same as yesterday. At least she did not lose weight. She had physical therapy today and the therapists are still extremely pleased. We now have a floor mat for her and we are going to start having floor time. It will do her some good to see things at a new level and get her out of the bed that has been a part of her life for the last month and a half. A special friend sent the following in a email to me and I wanted to share this with you. This is what I practice everyday, my emotions are on a roller coaster and it seemed so appropriate. Happy moments, Praise God A special friend sent our family a CD today, by a Christian artist, and tract #6 was pointed out to me. As I listened to it, I cried and just looked at my daughter and expressed to her how important God is in our lives. I hope as you read our journal, you too, know how important it is to believe in Him. The artist is Jeremy Campstay and the song is "I still believe". Please continue to pray for Barrett and that she will have a full recovery, that we will have a ten of ten match from a bone marrow donor, that once a bone marrow transplant occurs she will have very little GVHD, and that she will not receive anymore mouth sores. Mom 11:15 am - Mom and Dad had a good night with Barrett. Her PCV is low and they are giving her red blood. Day 29 chemo is still being postponed due to the sores in her mouth. Please pray that the sores will heal and that as she gets her chemo treatments, maybe through prayer, she will not suffer with the mouth sores. All in all, it should be a pretty normal day. Amie Joye
Tuesday, October 28, 2003 2:00 pm - Good Afternoon Prayer Warriors! Another prayer has been answered. We just received the lab information regarding Barrett's spinal fluid test from Friday. Once again the cells are negative for leukemia. Thank you so much for continuing to pray for Barrett. We have had two wonderful days. She rewards us with many toothless grins. The Doctors comment on what a fighter Barrett is and that makes us all the more proud of her. As if I could be any more proud of her! She continues to meet her developmental milestones and she weighs 11 pounds and 14 3/4 ounces today. Barrett had her feeding tube put back in on Saturday and all is going well with that. She continues to have mouth sores but all indications are, they are healing. They have finally got her pain medicine and itching medicine regulated so that she is comfortable. We are still hoping to start Day 29 chemo treatment later this week. As I wrote before, Barrett will be a pumpkin and we are participating in the Halloween activities here at the Hospital. I will be responsible for handing out Beanie Babies. The children cannot receive candy due to some are diabetic and some just cannot have it at all. Many of you have commented this weekend how much my journal has touched your lives. I would like to express that I do not deserve credit for this, because everyday when I pray, I ask the Lord for the words to write and my little angel gives me the strength to write them. She has taught me many lessons about life in her short five months. I want her to know as she reads this journal one day, what an inspiration she has been to me. She is truly God's Little Messenger and she has taught us a lot. Continue to pray for Barrett to have a full recovery. Mom 9:30 am - Mom and Dad had a wonderful Monday with Barrett. She is feeling much better. There is still no word on the results from the spinal fluid they took on Friday. Mom will update us later today. Please continue to pray for Barrett's recovery. Amie Joye
Monday, October 27, 2003 7:45 am - Good morning Prayer Warriors. Barrett had a tough day on Sunday. She has started developing mouth sores which is a side effect of her chemo treatments. They tell us they are very painful and it breaks our hearts to see her in pain. Every parent knows that you would trade places in a heartbeat whenever your child is hurting. Barrett is having a tough time with her pain medicine because she is allergic to each and every one of them. They treat her pain and she starts to feel better and then she starts itching. It had gotten to where the Benadryl was not even helping her with her itching. They now have her on a morphine drip and they are giving her two other medications around the clock to help her with the itching. She looks like Rudolph the Rednose Reindeer. Bless her little heart. What I would give to trade places with her? Day 29 of her chemo treatment will not happen until the mouth sores start healing. Please pray that Barrett's mouth sores will heal soon. We should have the results today from Barrett's spinal fluid treatment on Friday. Please pray that those lab results show no leukemia cells in her spinal fluid. For those of you who attended the Benefit Dinner on Saturday Night, thank you so much. I enjoyed seeing everyone and I appreciate your generosity and concern for Barrett. I would like to thank AJAX Distributing for the facility, Outback Steak House for donating food, O'Charley's Restaurant for donating food, Junction Alley for the music, and DBS and Associates coordinating this benefit dinner. Please continue to pray for Barrett and that she will have a full recovery. Mom Saturday, October 25, 2003 - (5 months old) 4:30 pm - No updates as of yet today. We hope to see you at the benefit dinner and auction tonight. Please continue to pray for Barrett and that she has a full recovery. Amie Joye
Friday, October 24, 2003
8:15 am - Barrett had a really good night last night. Not much should happen today. We are still unsure about whether or not they will give her a chemo treatment into her spinal fluid. We have to wait on the levels to come back first before they can give it to her. What I mean by "levels" is they are trying to determine how much of the chemo drug they gave her last time is still in her spinal fluid so they will know how much to give her this time. Please continue to pray for a full recovery and for her platelets and white blood count to come up. Thursday, October 23, 2003 3:30 pm - Good afternoon Prayer Warriors! There is not much to update except that we are having a wonderful day. Barrett's weight has increased a little more and she still has not received her chemo treatment into the spinal fluid. This may still happen today but more than likely will happen tomorrow. Please keep praying that there will not be any leukemia cells in her spinal fluid. I continue to receive many emails and enjoy reading them all. Please keep those emails coming. Don't forget Harley's bone marrow drive on Saturday. (It will be 10 a.m. to 3 p.m. at Old Harding Pediatrics, 7640 Highway 70 South, Bellevue, TN.) Many of you have asked to be tested for Barrett and now would be a wonderful opportunity to maybe help another child. Who knows, you may not match Harley but you might be a match for someone else in the future! What a wonderful gift! Please continue to pray for Barrett and Harley and the many other families in Clarksville that are dealing with cancer. Mom For those of you not familiar with Harley, there is an article in The Leaf-Chronicle today about her. You can also visit Barrett's Links and check out her website. Wednesday, October 22, 2003 3:30 pm - Good afternoon Prayer Warriors! What a beautiful day it is and I have a lot to be thankful for. The Lord has blessed me with one more day with my daughter. Barrett has received her rescue drug and the Doctors continue to check the drug levels in Barrett's blood. They cannot be to high and they cannot be to low, they have to be just right. I never realized how much mathematics and medicine went hand in hand. She still has not received her chemo treatment into her spinal fluid. They are waiting on those levels, to come back from the lab, to determine when to administer that drug into her spinal fluid. This procedure may not happen until tomorrow now because her Doctors at Vanderbilt are waiting on another Doctor from Texas to get back with them. Barrett's Doctors are working with other Doctors in the United States to determine the best care for her and how to best administer the levels of chemo that she receives. We now have over 15,000 hits a day on her website and if you noticed there are now updated pictures. My child is a ham for a camera. I wonder if she knows how cute I think she is? Last night when I went to the Ronald McDonald House, I ran into a gentlemen who is a grandfather of a very special young lady who has made me realize how truly blessed that I am. I have seen him around at Vanderbilt many times and asked him about his granddaughter. The granddaughter has had a bone marrow transplant and suffers from a disease that is not leukemia and I am not sure of the correct name of her illness. He stated to me one time that, "they cannot cure her, just give her quality of life". After I saw this gentlemen and his granddaughter last night, I immediately went to my room and got down on my knees and thanked the Lord for Barrett. Regardless of how long Barrett's time on this earth will be, we can hope that she will learn to sit up, crawl, and hopefully, walk and talk. Barrett can breathe on her own without the help of a machine. As the old saying goes, "you think you have it bad, but someone always has it worse". I do not want you to feel sorry for this family but the point I am going to make is that this grandfather looked at his granddaughter with pride in his eyes. I do not think I have ever seen so much love in someone's eyes as I saw in his for his granddaughter. The young lady was upset because she was still wanting to go for a ride in his truck. How many of us get so caught up in things that we want to do and when they don't happen we get angry? All this young lady wanted to do was ride in her grandfather's truck. There is a lesson here for all of us, I wish some of these kids could see how good they have it, because as a adult I have learned much from these sick children. I hope I can continue to remember what they have taught me for the rest of my life. Mom 7:45 am - Good morning Prayer Warriors! I have to apologize to you because I know I have not been updating the website as often as I used to. Since Barrett is feeling better and she is awake more often, we have the opportunity to work with her more and most importantly, to give her our undivided attention. She had a good day yesterday and had some problems with being sick to her stomach after she would take her bottle. The medicine they gave her for her stomach made her feel better and she finished receiving Day 22 chemo treatment at 7:00 p.m. last night. The Physical Therapist worked with her again yesterday and they are continually pleased with her progress. She is passing seven out of ten of her development skills. We have no doubt that the other development skills will soon follow. They stopped her TPN's this morning at 2:00 a.m., and for those of you who do not know what TPN's are, it is a nutrition substitute that she receives in her central line to help her get extra fats and calories. This is a good thing because the dietitions are pleased with her calorie intake by mouth. She continues to nurse and take a bottle. Today the Doctors will give another chemo treatment into her spinal fluid. Please continue to pray that there are no leukemia cells in the spinal fluid. The Doctors will also give Barrett a rescue drug today to help with her Day 22 chemo treatment. The Day 22 chemo treatment is a high dose drug and can be very damaging to her organs. The chemo has been given to her in her central line and has had time to get into her system to hopefully do it's job, then comes the rescue drug to remove the chemo drug. I hope all this makes sense because it is very complicated. They will repeat this procedure next Monday, Day 29. Please pray that Barrett will continue to tolerate this drug, that she will not get mouth sores, and that this drug will continue to kill her leukemia. Barrett has started exploring with her hands and she loves her Baby Vangogh. Barrett is truly a blessing. Please cherish everyday with your child. Remember, as I have learned, when that 3:00 a.m. feeding time rolls around, try not to think about yourself as being sleep deprived, but that you have been blessed with that special time that you and your baby can share. They will not be this small forever. It will not be long before I will hear Barrett say, "I can do it", and I will realize that she does not need me as much as she used to need me. I know that as the years come and go that she will bless us with many rewards and I will try to document everyone of them. Many of you have asked that I start updating her pictures on the website and I promise to do a better job of this. All my photography friends remind me that she will want to see these pictures one day and I have been selfish and thinking only of myself because when this is over, "Do I really want to remember her being sick"? I was not thinking about what Barrett may want. Please continue to pray for Barrett to have a full recovery. Mom Tuesday, October 21, 2003
7:45 am - Good morning Prayers Warriors! Sorry I did not update you yesterday afternoon, but she did not receive her chemo treatment until 7:00 p.m. The reason it was so late is they were getting Barrett's P.H. level up before they could start this treatment. This drug is hard on her kidneys and it is very important that her pH level remains at a certain level. The Doctors are planning on doing another chemo treatment into her spinal fluid on Wednesday. Please continue to pray that her spinal fluid will remain clear of leukemia cells. We had a wonderful day yesterday and she continues to reward us with many toothless grins. She has even giggled out loud for us a time or two. We say our prayers every night, one can never start to young, and I look forward to the night that I walk into her room and she is at her bedside praying. Is it not amazing how a child that is not five months old has witnessed to so many of you? Barrett gives me the strength to write and God gives me the words to write. Barrett is truly a messenger from God and she will always be my little angel. Continue to pray that Barrett's body will tolerate this new chemo drug, that the drug will continue to kill the leukemia cells, and that she will not get sick from this drug. Mom Monday, October 20, 2003 7:40 am - Good morning Prayer Warriors! We had a wonderful weekend, along with some more good news. Barrett's platelet count has started coming up, so she is scheduled to receive Day 22 of her treatment today. If she tolerates the drug well, she will receive it again next Monday. Barrett will probably have another treatment to her spinal fluid on Wednesday. Pray that Barrett's body will tolerate the drug and that it will continue to help her beat this disease. Those of you who have spent time in the hospital are aware of how Doctors rotate off and a new Doctor will rotate on. One of Barrett's Doctors, the one that was on duty when Barrett was having her seizure, was extremely impressed with how well Barrett was developing. She stated to me this morning, "it is like I told you, the brain is a wonderful thing, especially an infant's brain. They can overcome so much more than an adult". As she was reminding us of this, I started thinking about what she was saying and she is correct. It is a wonderful thing, just like our whole body makeup is a wonderful thing. It is a wonderful thing because God has made everyone of us, every cell, and he knows every hair on our head. You know when you get a scratch and it heals, we take how that healing process happens for granted. But when you learn, as we are learning how the body works, it is just amazing how God created something so amazing. I am truly aware that God is the one who is in control, He is the one who is giving the Doctors the knowledge and the wisdom to care for my child. The same for all her wonderful nurses and everyone else involved in her care. With God's healing hand on my child and Him hearing your prayers, Barrett is continuing to do well. When I pray, I tell the Lord that I will except whatever is in His Will and as hard as that reality is, "I truly, in my heart, will accept it and I will try as hard as humanly possible to not be angry". I have learned through all this, that when I start to worry because of some lab work we are waiting on to come back, I stop and ask the Lord to take my worry from me. This is all out of my hands and when I give this worry to the Lord, I feel so much better because I then can give all my attention to Barrett. We are all human and I do not want my words to appear that I am taking this in stride, all I am doing is taking baby steps each day. Continue to pray for Barrett to have a full recovery. Mom Check out the article about Barrett in the Local section of today's edition of The Leaf-Chronicle . Friday, October 17, 2003 4:10 pm - Good afternoon prayers warriors! We have wonderful news. The white blood cells in Barrett's spinal fluid came back with "normal" results. Keep up the good work of praying for Barrett. Barrett was running a 100.4 degree fever this morning, so they have started one of her antibiotics again. Please pray that her cultures will not grow any bacteria. She will not have any treatments this weekend, but we will update you of her progress over the weekend. Continue to pray that Barrett will have a full recovery. Mom 9:30 am - Good morning once again. The Doctors have not been in so there is not much to report at this time. Barrett has started running a fever of 100 degrees and they have drawn cultures. Please pray that nothing grows in those cultures and that her fever is just a fluke. They have started decreasing her antibiotics over the last couple of days and that is because she has been doing so well. Her feeding tube (nose tube) came out this morning and it was not planned. It was just one of those things that happens and I am glad it did. If she does not get the mouth sores during her next round of chemo and if she will take some of the medication by mouth, then the feeding tube should not have to be put back in. I'll get back with you on updates later after the Doctors come in. Mom 7:45 am - Good morning Prayer Warriors! I am writing this to give those of you who do not know me or my family a little bit of insight on our life. I am 36 years old and Neal is 39 years old. I have lived in Clarksville all my life and have very strong ties to my community. I have a brother named Teddy, Jr. and my parents are Teddy and Janie McCain. My extended family live in Clarksville, Tennessee, Pembroke, Kentucky, Hopkinsville Kentucky, and Jackson, Tennessee. I am a Planner for the Clarksville Montgomery County Regional Planning Commission and I have worked there for 13 years. I have a wonderful staff to work with and we are our own family. The Lord has truly blessed me with a job that I enjoy and with co-workers that are special to me. My boss is one of my best friends and I respect his authority as my boss. We are an extremely close family, one of those kinds that when you marry someone, you marry the family also. I do not think that is such a bad thing, as far as my family goes, because I have the most wonderful family in the world. We are always there for one another, and no matter how disappointed we may be when someone makes a wrong choice, we tell them we love them and help them through their situation. My sister-in-law, Jill, and I were pregnant at the same time and had our babies ten days apart. Teddy and her blessed our parents with a son named Trey (Teddy III) and Neal and I blessed our parents with Barrett. Jill and Amie Joye are the sisters that I never had and they are such a big part of my life. Trey and Barrett's personalities are very different, Barrett is the thinker and Trey is very active. The inside joke is, Barrett will instigate the trouble and Trey will carry it out. I remind Barrett everyday, during her pep talk, of the trouble that awaits her and Trey and she has to stay strong to be his accomplice. I have attended First Baptist Church of Clarksville, most of my life and even though I am not sitting on that pew every Sunday, my faith and beliefs have always been strong. My parents did a wonderful job of raising Teddy and me and for that I am forever thankful. I can only hope that I do as good of a job for Barrett that they have done for me and my brother. I know many of you do not know our family, but Barrett will be able to read this one day and feel blessed to have been born into such a wonderful family. Please continue to pray for Barrett to have a full recovery. Forever Grateful, Mom Thursday, October 16, 2003 6:15 pm - Hello Prayer Warriors! Not much happened today other than Occupational Therapy in which Barrett is still doing very well. Some of her preliminary lab work came back regarding her spinal fluid results. There were some red blood cells within her spinal fluid and those cells could be there from the Ommaya Reservoir procedure. Also, there were six white blood cells in her spinal fluid. The white blood cells are being tested to see if they are normal WBC or if they are leukemia cells. I believe the most WBC they like to see in the spinal fluid are five. So she is one over the cutoff. If these cells turn out to be leukemia cells, Barrett will have what is called CNS leukemia (Central Nervous System). If she has CNS leukemia then we may be faced with having to give Barrett radiation. Remember we have had one good test from her spinal fluid and we can hope that this second test shows these to be good cells and not leukemia cells. We will probably not know the results from this lab work until tomorrow.
11:00 am - Sorry for the late update. Barrett had a chemo treatment into her spinal fluid last night and all went well. The Grandmothers stayed with her and she got a good night's rest. Not much will happen today as far as her treatments but Mom will update us later if anything happens. Please continue to pray for Barrett to have a full recovery. Amie Joye Wednesday, October 15, 2003 1:20 pm - Hello Prayer Warriors! We have had some more wonderful news. Barrett's CAT Scan yesterday showed some more reduced swelling and some of the bleeding has resolved. What wonderful news! The Lord has his healing hand on Barrett and with your prayers she continues to improve. They have removed the PICC Line and as soon as she wakes from her nap I will give her head a good washing. She will not like me very much for it but we will not sweat the small stuff. They are planning on doing a chemo treatment today into her spinal fluid. Continue to pray that her blood counts will improve on their on, for her body to continue to respond to her chemo treatments, and most of all for Barrett to have a full recovery. Day 22 is still being postponed until she starts making platelets. She is waking now, so I must go and spend this precious time with my daughter. Mom 7:45 am - It is late and when you read this on Wednesday morning, I hope you feel how thankful this Mother is for this wonderful day. My daughter has started cooing and it is music to my ears. She is laying in her crib now listening to herself and looking in a mirror at herself and laughing. How blessed am I? I was at the Ronald McDonald House earlier dropping off one of your donations, given by a very special friend and her family, and the ladies stated how thoughtful you all have been in giving to the Ronald McDonald House. I cannot express how much your donations to the R.M.H. have meant to me, I am so overwhelmed by your gifts. While I was dropping off the donation, they asked how Barrett was doing and I said, "in my eyes she is perfect, in her Doctors eyes she is stable. I am just thankful to have another day with her". How many times do we hear of tragedies and think, "I am going to start living my life to the fullest"? I am guilty of saying this. I do not know how many times I have said the same thing. Since Barrett's diagnosis, I have learned to be thankful for everyday that we have together. Another lesson my daughter has taught me. Many of you have stated how much my journal has touched your lives and how your priorities have changed. Well, do not thank me but thank my little angel for giving this gift to write to you through our journal. I always thought I new what it is to love, but one never knows how much you can love someone until you have a child of your own. A very special someone mentioned tonight in conversation , "that when you give a gift you will receive a gift back". I have learned this and I have learned that the gifts that mean the most to me are not the material gifts but the gift that you know you helped someone out. They are truly one of the most priceless gifts you can receive. My community has given so much during this difficult time and I hope everyone of you feel that you have helped us out. Barrett continues to reward us with her toothless grins and her personality blooms more and more everyday. I hope one day, when she reads her journals, she will know how much she has rewarded us with each new thing she has done. I will post you of the day's events when we talk to her Doctors. Continue to pray that no infections arise from today's procedures along with a full recovery for her. Mom Tuesday, October 14, 2003 9:00 pm - (5:00 pm) We are finally back in our room. It has been a long day. As Amie Joye stated earlier, Barrett's procedures went well. She is very tired and is sleeping now. I have decorated her room for Halloween, it looks doubtful that we will be home by then. I know she is to young to notice, but this is her first and you only have one first. If you have ever been to a unit where children are there for long periods of time, you would see how these children decorate their rooms to give themselves a home like environment. You have to admire them for this because I have followed their example for Barrett. The Doctors installed her central line in her chest and the Ommaya Reservoir. They are already using her central line and if the CAT Scan shows the Ommaya installed correctly, we will get to begin her chemo into the spinal fluid tomorrow. We are continuing to pray that the spinal fluid that is tested tomorrow, will still show very few leukemia cells.
2:45 pm - The Ommaya Reservoir procedure went well. Mom should get to see her in the next 10 minutes. She will update us after she sees Barrett. 1:50 pm - Mom just called. The first procedure went well. They have installed another central line in her chest. In a few days, they will remove the picc line from her head. Grandma is disappointed because she won't be able to put a pink bow on the picc line now. :) Dr. Morgan has bragged on how well Barrett looks. As you read this update, Barrett is having the second procedure performed. Audrea will update us once it is over. Amie Joye Monday, October 13, 2003 1:45 pm - Good afternoon Prayer Warriors! Mom is beaming today. We are very blessed for this day. Barrett is doing very well. You would not even know that she is sick. As I said before, about being blessed with seeing her do things a second time, when you have not seen your child do these things in over a month, you feel very fortunate. I have to wonder if she is developing normally, will she be like other children, will other children make fun of her? I will not always be there to protect her and that hurts, as it hurts all mothers when there child's feelings get hurt. I have to remember and to teach Barrett that she is special and God has made her the wonderful person that she is. Barrett laid, tummy down, on her boppy last night and lifted her head and looked around. You would have thought she had turned flips in her crib. Barrett is scheduled to have her Ommaya Reservoir installed tomorrow morning, starting around 10:30 a.m. We have to give her many transfusions of platelets today to get her counts over 100,000, so they will be able to do this procedure. The catheter will be about 2 inches long and will go between the brain and scull. This will never be removed once it is installed and the neurosurgeon does these procedures quite often. Pray for this procedure to go well, no infection, and that we will soon be able to start her chemo in her spinal fluid. While they have her sedated, they plan to install another central line into her chest. She already has one central line, but because she receives so many meds, they need another line. She currently has a PICC line in her scalp and if this additional central lines gets installed with no problem, they will be able to remove the PICC line. Pray that this procedure will be able to take place, no infection, and that it will be successful. Thank you all for your continued concern and prayers. Audrea 7:45 am - Good morning Prayer Warriors! I really do not have any new information to share with you this morning. Our hopes today are that Barrett's platelet count has started coming up and that we will be able to get her scheduled to have her Ommaya Reservoir surgery. Her white blood count continues to double and we are all very pleased with that. We had a wonderful Sunday. Remember the first time you see your child stretch and think, isn't it amazing that they do it just like the rest of us and they have never seen anyone do it before? Well, Barrett has not stretched like that in a long time and she rewarded us with that on Sunday. Along with her stretching, she has started kicking her blanket off, I remember when she used to do that before she was sick, and I would get aggravated at her because I would have to stop doing something and cover her up again. Well, never again will I get aggravated at her or least try not too. The Lord has blessed me with experiencing these small things not just once, but twice. How lucky am I? Barrett is acting like herself more and more everyday. We feel that this is a sign that she is feeling better. The nurses that have been away for several days and come back are just amazed in the change in Barrett. Please continue to pray for Barrett to have a full recovery. Mom Saturday, October 11, 2003 2:00 pm - Good afternoon Prayer Warriors! The Doctors have been in and we are going to put off Day 22 of her chemo treatment for another couple of days. The reason for that is she is still not making platelets on her own. The good news is her white blood cell count doubled from yesterday. The Doctors are hoping that in the next couple of days she will start making her own platelets.
Friday, October 10, 2003 8:30 pm - Well, the results of the MRI are back and I do not have a good answer regarding the results of her test. The spinal fluid which is also the fluid that surrounds the brain is showing up on the MRI. Normally, that fluid would not show up on a MRI. Anyway, it can be one of two things. It can be blood in her spinal fluid or it could be leukemia cells.
The success rate for someone with Barrett's disease is 10% to 20%. The percentage does not increase with a bone marrow transplant. I will be honest. Mom's intuition still feels very confident that Barrett will beat this disease. I know many of you have stated that you feel the same way and I am not living in dreamland here. I am still very much aware of reality, but my heart still feels very good about this.
7:30 am - (This update written last night at 10:30 pm.) Sorry for the late update. It has been a very busy day. They did not get to do the MRI. You could say the left hand did not know what the right hand was doing. She is definitely scheduled to start her sedation at 10:30 a.m. tomorrow morning (Friday). Please pray for a safe sedation, a successful MRI, and an improvement in Barrett's condition from her strokes and the bleeding on her brain. We had a wonderful day. The occupational therapist is still very pleased with Barrett's progress. Mom and Dad think she is doing wonderful and we feel very blessed to have this time with her. Everyday is a gift from God. As I drove home today and I see the trees starting to change, even though Barrett is to young to notice the beauty that surrounds us, I still want to share it with her. I enjoy this time of the year and I wonder what time of the year will become her favorite? This would be her first Halloween. I had already purchased her costume and she is to be a Pumpkin. I had also purchased her dress for Christmas, it has candy canes smocked on the dress. If you have never heard Brother Roger tell the story of how a candy cane and Christ resemble one another, then you have truly missed a wonderful story. I chose the candy canes for her Christmas dress because of this special story, I did not want Santa Claus or Christmas trees on her dress because they are not what Christmas is about. He tells this story every year to the children and I explained to Brother Roger the other night how I love hearing him tell that story. I know that I am rambling, but the point that I am trying to make is that it breaks my heart when I think of all the plans that I have for her. She is my life and every breath that I take. A very dear friend sent me an email today and I want to share it with you. A woman was asked by a co-worker, "What is it like to be a Christian?" The co-worker replied, "it is like being a pumpkin. God picks you from the patch, brings you in, and washes all the dirt off of you. Then he cuts off the top and scoops out all the yucky stuff. He removes the seeds of doubt, hate, greed, etc., and then He carves you a new smiling face and puts His light inside of you to shine for all the world to see." I want to share another story with you and please understand when I tell you this, I do not want a pat on the back, I just want you to know that your gifts keep on giving. As I was walking down the hall at the hospital this afternoon, I saw a baby being brought in the ICU by the EMS. A young mother followed close behind. I remember that look on her face, I was there a little more than three weeks ago. Neal and I have been blessed by wonderful friends who have supplied us with plenty of food. So when I saw this young mother, I went back into our hospital room and packed her a goody bag full of your snacks. I also gave her some rolled quarters so that she could make phone calls back home. These rolled quarters were also given to us from some very special friends. As I introduced myself to this mother, I just explained to her that we were there for her and if she needed anything else we had plenty. She was speechless, she just cried and gave me a hug. I want you all to be very proud of yourselves because you have taught me how to give freely and I have to say it is a wonderful feeling. So see you have also given me a wonderful gift, also. Truly Grateful, Mom Thursday, October 9, 2003 9:15 am - Good morning Prayer Warriors! Neal and I had a wonderful night with Barrett. She slept in her crib all night and it felt like she was back to her old schedule. At one time last night she was talking in her sleep while her father snored away. Neal will kill me one day for this, but honestly it was really cute. We are still waiting to see if they will get her MRI done today. I will let you know when I know. They were supposed to start her on a new chemo shot today, but they have postponed it for at least two days. The good news about that is, her body is recovering. It is making good cells and they want to continue to let her body do that for two more days. With this new chemo shot that they were going to start today, they need the body to be healing itself. So one would think postponement is a bad thing, but Mom thinks it is wonderful because she is making her own cells. The Doctors are pleased with this also. The reason they have changed her chemo shot from what she has been receiving is, I will explain it to you as it was explained to me: "Cells are smart, and the chemo she was receiving, the bad cells will start learning how to avoid that drug. So they start a new type of chemo to outsmart the cells. Of course, this chemo shot will kill good cells along with bad ones, so that is why we need her body to be healing." Hope that explanation helps. Please pray for a normal MRI and for the problem (still unknown) with her spinal area so that we can have a successful spinal tap. Mom Wednesday, October 8, 2003 3:30 pm - Good afternoon Prayer Warriors! Barrett will not have her MRI today, but they are planning on doing that procedure tomorrow. They did not want to have to sedate her two days in a row. Pray that the MRI will bring us good news. We are hoping that it will show that more inflammation in her brain has gone down, that her spinal column is normal, and overall no abnormalities show up. As I write to you, I can hear Barrett talking in her sleep. What a joyful noise to my ears. We are having a good day today. Many of you are asking about being tested to see if you are a match for Barrett. I am still working on that answer, and as soon as I know, I will post it on the website. On my trips home, I go into Barrett's nursery, and her scent is in every drawer and even in her closet. I do not go to her room to find misery, but to find comfort and to make sure everything is the way I want it to be when she comes home. I have placed her "Angel of Hope" and "Angel of Prayer" figurines on her book shelf, so the Angels will be watching over her during her sleep, when I cannot. We so look forward to decorating our Christmas Tree this year, as we will place many of the ornaments that you have given to Barrett on our tree. I will think of each of you as we hang them and I will always remind Barrett every year as we hang them together, who gave them to her. For those of you who visit and have noticed an angel pin that I wear everyday, there is a special story behind the pin. The story goes, a very dear friend's son was in a car accident, and they like us, spent more time up here than anyone wants too. Someone gave her an angel pin and she wore it everyday and continues to wear one to this day. She gave me her angel pin and it will be my job to pass this pin on to someone else in need one day soon and I hope it comforts them as it has me. Mom 9:30 am - The grandmothers stayed last night and Barrett slept in her bed for 4 hours. She is eating well. She is tracking them across the room, laughing, and playing. 7:30 am - It is 10:00 p.m. as I write to you. It has not been a good day. Not only did Barrett go 15 hours without food they also did not successfully complete the spinal tap. To make a long story short, they could not tap into her spinal fluid due to something showing up on the ultrasound. They thought it would be better to wait and learn more about what is going on. Hopefully, a MRI will answer those questions. One of the things they believe it could be is from the previous attempts on Friday and Monday. She could have had some bleeding and that is what is making it hard to get a good clean tap. Please pray that whatever it could be, that it is something that will heal quickly and we can continue forward with her treatment in regards to her spinal fluid. Her other chemo will continue as scheduled. As frustrated as I am, and the word frustrated is a understatement, I have to find something good in what happened. Now that I am home for the night and I am in a comfortable environment, I can tell myself that, "the spinal tap was not meant to happen today". It was God's will, I have to find comfort in that. To explain further why I feel this way, here is what else happened. Once they finally decided who would sedate her, and then they got her sedated and took her to radiology, the machine broke. So before they moved her to the other room to try and finish the procedure, someone decided to do the ultrasound of her spine and that is when they found this problem. What problem you ask? I wish I had the answer. All I was able to get this evening was, "we will not no more until an MRI can be done". Not the answer I want so I will have to find comfort in knowing the God did not want them to stick her again today. I have to believe it was his way of telling us, "Don't do this procedure". I pray that tomorrow will be a better day. Many of you have shared your favorite Bible verse with me and I have found one that gave me great comfort today and now I want to share it with you. It comes from Isaiah 41:10 "So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you". How appropriate? Barrett is still rewarding us with her toothless grins and her physical therapist is very pleased with her progress. So, looking at it that way, it was not such a bad day after all. As I have been writing this, I find myself unwinding. This journal is not only my personal thoughts, but also my therapy. Neal and I had blood drawn today so see if we are a match for Barrett. The chances are very slim that one of us would be, but there is always the chance. We also signed paperwork to start the bone marrow search. Pray for a perfect match for her. Please continue to remember us in your prayers, that is all we need anyone to do at this time. Tuesday, October 7, 2003 9:15 pm - Well, it is 5:00 p.m. and my child has gone without food for 13 hours now. They are just now starting the procedure. Mom was furious when she overheard some Doctors mentioning that this could wait until tomorrow. Let's just say, it is being done today. Please pray for Mom to regain her patience.
3:00 pm - We are still waiting on Barrett's spinal tap. I will let you know when it is over. 12:00 pm - Hello Prayer Warriors! The latest information that we received was they are going to try to do the spinal tap around noon today. Please pray for a successful one and for the results to be just as good. Neal and I rested with Barrett last night. She is needing human contact almost 24/7. I guess being in the ICU for a week and not being held during that time had a impact on her. I know it did on me, holding her again was wonderful. I will update you all later today. Mom
Monday, October 6, 2003 8:15 pm - Hello Prayer Warriors! Barrett and I have been resting all afternoon. Having cuddle time, as I like to think of it. As it was stated earlier, they will try again tomorrow on the spinal tap. They will have the help of radiology tomorrow and we are not sure what time this will take place. Please pray that it will work tomorrow. We are anxious to know the results of that tap and they will also inject a chemo treatment at the same time. Our pastor came to visit with us this afternoon and we prayed together as a family. As I mentioned, two Sundays ago, we had Baby Dedication and Brother Roger mentioned during that Dedication that she was a messenger from God. I have thought about that since the Dedication and I questioned him today to make sure I understood him correctly. I explained to him that I felt that she has sent me a message and Brother Roger asked what I thought that message was. I explained to him that Barrett has helped me renew my faith. Perhaps "renew" is not the correct word because my faith was never lost, but my little angel has definitely made my faith stronger.
3:45 pm - Unfortunately, the spinal tap did not take today. They will try again tomorrow and they will use an ultrasound to help guide them so that maybe they can get the spinal tap done. Please pray for a successful spinal tap tomorrow. Barrett has had a fever off and on today. She has slept in Mom's arms all day and both have rested comfortably. 10:00 am - Barrett has been taken back for her spinal tap. Please pray that all goes well. 7:40 am - Good morning to all! Barrett is to have another try at a spinal tap this morning. Please pray that this one will be successful. She will also have another chemo treatment today. The three of us had a nice Sunday together. Family time, as I like to call it. We had our Sunday afternoon nap with very little interruptions. As everyone knows, you do not get much rest in a hospital room, but our nurses are quiet as church mouses. They are all wonderful and deserve a huge pat on the back. One of Barrett's Doctors keeps asking if he can take her home, but we had to tell him he would have to get in line. I have come the realize that there occupation is not just a job, but their occupation is there life. Sometimes you can go out in the hallway in the middle of the night and they are still there working on paperwork or on the computer. I have to say that I admire their family. These Doctors are truly dedicated to their patients. I will update you all when I have information regarding her spinal tap. Have a wonderful day!
Sunday, October 5, 2003 8:00 am - Good morning prayer warriors! Just an update
before you go to Church. We had a wonderful day yesterday. I was rewarded by
several toothless grins. Aren't they just the cutest things? They are
definitely worth their wait in gold. Barrett has been high maintenance today
and I say that in a good way. She has wanted to be held and cuddled all day.
You know, it just
Saturday, October 4, 2003 9:15 am - Good Morning! The Grandmothers and Barrett had a very restful night. Barrett is now putting on a show for them. She has a pacifier in her mouth, one in her hand, and one on a string. She is grinning, laughing, and kicking her legs. When you read my journal please remember not only am I sharing my personal thoughts with you but also recording them for me and Barrett at a later date.
Forever Barking,
Friday, October 3, 2003 3:55 pm - Another thought. As I sat here reading your emails, one struck a nerve. A young lady and her friends gathered in a circle today at 1:15 p.m. to pray for Barrett's spinal tap. She stated that others made fun of them. I feel it is such a shame that people are that insecure in their own beliefs that they have to poke fun at others for their beliefs. Neal and I committed on Sunday, during Baby Dedication in Barrett's hospital room, to raise Barrett in a Christian home and to be good Christian parents. We are committed to this. I do not want to appear as a hypocrite and I cannot promise that I will be in Church every Sunday, but I can promise that I will do the best job that I know how to do for my child. I told this young lady to hold her head high, especially when it comes to her beliefs. There may come a day, when those who laughed at these young people, will need the power of prayer to get them through a hard situation. I am so out of my league when it comes to quoting scripture, but I know I am comfortable in what I believe is right. My family raised me in a Church that has been there for me through many difficult times. My Church has never turned their back on me, so, "how can something so right, be wrong"? That is not a question, but more of a statement. Once again this is not a subject that I can argue so I will keep the rest of my opinions to myself. Hope I did not offend anyone. Mom 3:45 pm - Good afternoon prayer warriors! Well, our spinal tap did not work today. We will have to try again Monday. I do not know what time that will happen, so pray for a good spinal tap on Monday. Neal and I had a very long night last night. What made it so scary was that it appeared we were heading down the same road as this time last week. The Doctor stated that since she is on the anti-seizure medicine, he does not feel that a seizure is a threat. Regardless of Mom's worries, the Doctor thought she looked good and did not seem to share my worries. Pray for many more good days to come. We are extremely worn out today. We got very little sleep last night and the Grandmothers are pulling patrol tonight. Pray for a good night for the Grandmothers. Barrett will
have another chemo treatment tomorrow and then another one on Monday.
Hopefully, she will also get the chemo treatment in her spinal fluid on
Monday. Have a good weekend! Mom 10:15 am - Good Morning! Mom, Dad, and Barrett all had a restless night. If
you don't mind, please limit your visits and phone calls today so that the
family can get some rest. Please continue to pray for Barrett. At 1:00 today,
she is having her spinal tap so pray that all goes well. Thursday, October 2, 2003 6:45 pm - Wow! What a wonderful day! We are rejoicing in it! There will be more bad days, but we are grateful for the good ones. They are going to do another spinal tap tomorrow with a chemo treatment into her spinal fluid. This will be done around 1:00 p.m. Prayer warriors be ready to pray. Pray for the success of the spinal tap and for a good report once it is done. Thank you all for everything. I know you keep thinking how many times is she going to say that, but when you are in our shoes and I feel that your prayers are giving me one more day with my daughter, you can only imagine how grateful one can be.
12:15 pm - Hello once again! The Hemoc Doctors were just in and gave us even more good news. The 4/11 chromosome does not appear to be in her last bone marrow sample. Her white blood count has doubled since yesterday. Yesterday it was 100, today it is 200. As I said yesterday, this may go up and down, but she is starting to heal. I feel as if I owe everyone of you the world for this wonderful day. We have had such good news all day and I believe all of you played a large role in that. The Doctors here are wonderful, as I have stated, but I believe the Lord has blessed them with the knowledge and wisdom to treat her. One of her Hemoc Doctors stated, "she continues to surprise me". That makes Mom and Dad very proud of her. Well, it is time to give Barrett another pep talk. I remind her daily to use that Irish blood and fight. Mom and Dad 11:15 am - To let you know how our Lord works in mysterious ways and brings us all together for a reason. I had a friend and sorority sister, whom I admire, contact me today. She is starting her chemo treatment today and she and I had a very emotional conversation. She stated that she had read Barrett's website for the first time yesterday and could not get us out of her mind. I was unaware of this and I felt the need to call her yesterday because I have not been able to get her out of my mind. I left her a message letting her know we were thinking of her. During our conversation, she told me that her sons had said a prayer for Barrett last night. The children's prayers are so special and they touch me very deeply. There are many people in Clarksville that are experiencing what we are going through in one way or another. Let us not forget those families in our prayers. Prayer is a powerful thing and each and everyone of you have proven this. Neal and I will be eternally grateful. Mom 10:45 am - Good Morning! And what a wonderful morning, I am sitting here looking at the cutest little girl. She is sitting in a tub of water getting a bath by her Grandmothers and one of her sweet nurses. Beth Weakley, I have met your twin. Mom got a little weak in the stomach so I decided to write to you all instead. She just had her EEG and, if you have never seen one done, they put a lot of Vaseline like substance on her head to get the probes to stick. Well, Mom has found her weak point. I cannot deal with anything sticky being removed from Barrett. I feel as if it hurts her and it makes me queasy. So Neal and I have determined what each others jobs will be when we get home. I will give the shots and he will change the bandages. Isn't it amazing how God works! Her EEG did not show any seizures being present at this time. Great News! More wonderful news! Thank you for your prayers especially the ones this morning. Her CAT Scan reveals significant decrease in her lesions in her brain. What wonderful news! They will not do another CAT Scan until next week. Let us pray that we'll have more improvement. I thank God for our wonderful news because I feel his healing hand on her. Without my faith, were would I be? I hate to know that I could be going through this without my faith. Barrett is receiving more chemo today and they may try to start her feedings again. We continue to take baby steps instead of giant leaps. 9:00 am - Good Morning Pray Warriors! As I write this update, Barrett is having her CAT Scan. Please pray for an improved CatScan. Her EEG will be around 10:00 am. We also pray that shows she is not having seizures. Barrett had a restful night last night. I will update you later as I have information from those results. Barrett has had 10,000 hits to her website the past 3 days. Thanks for all your thoughts and prayers!
1:15 pm - Hello Prayer Warriors! Barrett has had her physical therapy today and I have been working with her since they left. She is resting now and we are waiting for them to come in and do her EEG. If I have not mentioned it before, the EEG will detect if her brain is still having seizures. The Hemoc Doctors have been by and stated that Barrett's White Blood Counts may be improving. That is great news. I think the Doctor was a little stunned. We will see the White Blood Counts probably go up and down for a while until she starts making them on her own. Pray that Barrett's body will start to heal. We will not be able to go home until she is in remission and is making good cells so that she is not in danger of getting an infection, she has no infection, she has no fever, and she can tolerate food without getting sick. We still have a long road ahead of us. She had another chemo treatment today and will have another one tomorrow. Pray that day 28 will come and she will be in remission. When we get to the bone marrow transfusion we will have to be here another eight weeks. Pray for our strength. Yesterday, I just wanted to run for the hills screaming. Neal and I have been in a small hospital room going on eight days and we have yet to have a cross word with one another. For those of you who continue to ask what can you do? I had a thought. The Ronald McDonald House operates on donations. They have a wish list or you can simply donate items that you would use at home. For example, paper towels, toilet paper, cleaning supplies, laundry detergent, etc. They are on the corner of Fairfax and 24th Avenue. The doors are always locked so you will have to knock and someone will come to the door. Hopefully, I will have news regarding her EEG later today. Keep praying for Barrett's body to beat this disease, then heal itself, and hope she can overcome any developmental problems through her therapy. Truly Grateful, Mom
9:15 am - Good morning! Mom, Dad, and Barrett rested well last night. She will have an EEG today to see if she has had any more seizures. The physical and occupational therapists will also come back in to do more therapy. Please pray for the physical and occupational therapists to help Barrett overcome the damage caused by the stroke. Also, pray that Barrett has no more seizures or strokes.
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